MIDDLE-AGED WOMEN 40-60ish
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Loral, I'll just chalk it up to the change of seasons.
I finally did have to call my MO's office to get further blood test results. There were a few wrinkles:
High glucose (138) but they never ask me to fast first, so I don't think that is too worrisome.
A high calcium...now this worries me, because the two scenarios I think of are osteolytic bone mets (probably don't have that) and osteoporosis (probably am heading toward that.) I have not been taking calcium supplements very much lately because they neutralize my stomach too much. If I do get back to taking them regularly, will that help my bones or put even more calcium into my blood? Does anyone KNOW about this? I am feeling too lazy to Google, so I might call MO's to inquire.
A completely normal CEA (1.0), yet the highest of any of my CEA tests including when it slightly elevated during chemo. I WAS a little freaked that it was an increased number for me, but then I double-checked and saw that this test was done at a different lab using different equipment, so I promptly went back to not worrying at all about this. Really felt I should post about this because we all worry about our numbers and it is a reminder that the results could show a change if the testing is not done at the same lab every time.
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I am taking Fosomax because I was borderline osteoporosis when they did my BD test. I take 1200 of calcium a day in addition and should be getting another test to see how the Fosomax worked.
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Eli, I have the calcium thing too. Therevis no sign of bone mets, so my doc is sending me to an endo for a thorough thyroid and parathyroid check. With me the supplements mostly end up in my blood rather than in my bones
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Left my question on the MO "nurseline" so hope to hear whether supplementing is recommended or not. Momine, I may have to wait and see what my calcium is six mos. from now, to see if this is anything to require further investigation. I guess I will have to read up to see how the thyroid and/or parathyroid could play a part.
The last thing I need is some new thing cropping up. Or any residual crap from the crap I have already been thru'. I am so looking forward to next year when I will have my final heavy surveillance (CT, and later colonoscopy) after which I am hoping I do not require a close watching of any kind for anything!!!!!
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The nurse called and she said it would be o.k. to take a calcium supplement and reminded me to take it with Vit. D (Duh, right?) for better absorption. She also asked if I drank a lot of fluids, whereupon I admitted to tea consumption...so then we got to talking about caffeine and yes, I do know that caffeine is not the friend of a menopausal woman's bones (heart, maybe, but bones, no) so the plan is for me to scale the caffeine way down. I had only a very slightly elevated calcium number, so we all felt comfortable just waiting to see how I do at my next six month interval blood draw.
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My header pic this week is in regard to the upcoming month of October, co-opted as Pinktober.
My interpretation of the "Let them eat cake" quote, commonly mis-attributed to Marie Antoinette, is this:
"Marie Antoinette" is the self-centered greed of capitalism. The "cake" is the pink-washed awareness campaign, really shoved down everyone's throat during October, with the most hungry of the "peasants" (them) being the Stage IV metastatic women (and men.)
Hey, I can't draw a political cartoon. The header was the best I could do.[For the record, it's not strictly the AWARENESS that I don't like. But so many $$ spent on it, when research for a CURE, comparatively, has to go begging. Each year another 40,000 die of BC. That figure has remained constant for 30 years now. Where the progress there? Hmmmnnnf!]
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Hey ladies! Just checking in with the middies! I know I'm going to forget something I read but you Can't. Go. Back!
Elimar - maybe try some of those Viactiv chewable calcium supplements. The caramel flavor is pretty darn delicious! I'm so tired of residual crap too! About the high glucose, why can't they call you beforehand and tell you to fast? It's like throwing money away to test that after you've eaten. Ugh!
glennie - I couldn't believe my doctor just flat out denied 4 or 5 pain killers per month, either! These harsh anti-cancer treatments left me with a lot of pain. I've been off all of them for almost a year and still in pain almost all the time. I would say that maybe all of this pain can be attributed to a fibromyalgia/chemo conflict but my bones hurt, too. I just hope it's not forever.
I can endure it most of the time but some days I can't function and is that why we went through all of this? I'm sure he wouldn't deny himself pain pills if he felt like this. How presumptuous and insulting to assume I would get addicted or what, sell them? Telling me I "don't want to go down that road" is not doing me any favors, but gee thanks for caring doc.
I have so much heavy physical work to do around here to load up my store. The pain is robbing me of my opportunities to get it done. And y'all know how rarely we get chances to work on something extra around the house. GRRRRR!
My brother had a good idea about the store. Instead of committing myself to a mental ward (OOPS! Freudian slip!)... instead of committing myself to 6 days per week, 5 or 6 hours per day for months, I will just have 3 long weekends of an "estate sale". Fri, Sat, Sun for 8-10 hours each day. Then BAM! I'm outta there!
glennie - I finally won the war on my Vitamin D levels. For the first time since I was diagnosed 5 years ago, not only did I get it out of the thirties... it is now 71! I tried expensive liquid drops, I did sublingual, I got the most highly rated brands, I took them 3x day with 1000 mg Vitamin C per my endocrinoligist... I live in a very heavily wooded forest so not much chance of sun unless I go somewhere else. I was about to go to a tanning salon but after much research on the internet (you know how much we ladies love to do that now....), I saw trials where they were giving patients up to 15,000 IU per day. I said, why not? So I took 5000 IU 3x day with 1000 mg Vitamin C and VOILA! That was what I needed to break through the barrier! I've reduced my dosage now to 10,000 IU per day and if it maintains I'll go down to 5000 IU and see how that does. I don't know if some of us are bad metabolizers or what, but I was beginning to think I was stuck in the 30's. And doomed!
Of course, after 5 years of trying to get my Vitamin D levels up out comes a conflicting study! I saw that post on here about Vitamin D levels above 40 causing all sorts of problems, including bladder cancer I think. So as usual, we're damned if we do and damned if we don't.
NativeMainer - LOL'd that Eph has to be 22 now! Guess I have to be 27 now.
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HnS: Is it your MO or your PCP who says no? Ask a different doctor? Is it possible to find another doctor? Since you have suspected fibro,, what about consulting a rheumatologist? Perhaps that person would be more sympathetic about ordering a few narcotics a month? That is who prescribes mine. Course he wants to be sure I'm not taking "too many". But I have a proven track record with him, so he will do it. I dread the day he retires, though. He's 70 now,,,, Glad you were able to get your Vitamin D levels up. And that's just one study. I'll see what my PCP says when I see her again in Nov.
I think the estate sale is a great idea!!
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HnS, we sure look good for being so young, don't we?
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glennie - my PCP said no and my MO ignored my complaints of pain and I even circled the little #8 sad face on her pain chart! So those ARE my proven track record doctors! Not once through all the chemo and Tamoxifen treatments over 5 years did I ask my MO for pain pills but now I'm saying IT HURTS and no offers from her. I don't think asking her directly at this point would matter since I'm not going to go back on any more treatment. I have too much pain - I'm through! When I see her in about 10 more days she'll probably finally move me from every 3 months (for 5 years!) to every 6 months.
I'd be embarrassed to go back to the rheumatologist who diagnosed the fibromyalgia. It was 20 years ago and he said there was nothing you could do about it so I just never went back. But I was young and doctor-less so that made sense at the time.
He prescribed Sulindac and cyclobenzaprine and I've had one doctor or another refill those over the years since then. I could get by for a long time in-between doctor's visits. But now I find myself more chronically afflicted. Ugh, I hate to add rheumatologist to my growing list of doctors. But you're right, he might be the one to go to for constant pain. I'll say, "Heyyy, remember me?" Haha, oh gee. His partner treated my father for a rare auto-immune disease and once when my father and I were there MY rheumatologist suddenly opened the door and we just stared - shocked - at each other for a moment then he got his composure and called my father's doctor out for a minute. It was the way he slung the door open and I probably looked guilty as hell, haha
I must be a "burn your bridges" kind of person because when I'm through, I'm through! But fortunately, I also don't mind facing the music for my disappearances so yeah, I'll put him on my list.
I guess I need something more than flying by the seat of my pants now.But next week I start my no doubt long ordeal - I mean association - with the Emory Back Clinic. Maybe they can spare a few! They make you feel like a damn addict for asking for them and I haven't had any since my knee surgery in 2012. Maybe I just have guilt written all over my face all the time! Boy I hope I never get accused of anything serious!
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Eph - heck yeah! I don't look a day over 26! My son better stop aging!
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Your MO circled an 8 on the pain scale??? And gave you nothing??? Ask how he would feel if he was at an 8. If you were in the hospital, and told them you are at 8, they would be giving you IV morphine. When you go back in 10 days, ask for a pain medicine consult. **give me 10 lortab/vicodin/Percocet and they will last me a month** That is NOTHING!
I just watched this video required by work,,, supposed to help us learn about having better attitudes, etc etc,, and it was all about a 63 year old BC patient who comes to the ER with PAIN!! One nurse thinks she is drug seeking. The woman's son overhears and gets mad, cuz he says "we told you her pain is different this time, my mom is not looking for drugs, she wants to know why she is having pain". And they ran tests, and she had mets in spine. So this is supposed to teach us not to have pre-conceived ideas about patients,, and I thought it was really good (a little hard to watch with the subject matter) cuz too many medical people DO NOT take pain seriously. I have seen it in my career as a pharmacist,, and having been a pain patient,, I've seen that side of the line as well.
As to the rheumatologist,,, do you have to go to the same one? If you do want to, you could tell him that NSAIDS (sulindac) worked for a long time, but now they are not controlling the pain. You would like a new eval concerning your pain. Just throwing this out there at you. Yes, I really do understand not wanting to see yet another doctor. I have too many of them myself. Maybe keep that idea in your back pocket, in case Emory doesn't help you?
When you go to Emory,, just keep telling yourself,,, I am in pain, and I deserve to have some adequate treatment for it. Do not feel guilty for asking for pain meds. You need them. I really hope Emory will help. Please keep me posted. (((hugs)))
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OMG, heartnsoul76, I cannot believe no one is addressing your pain. I think that sometimes when they have you down as one type of patient then you get stuck in the pigeonhole for that disease and they are don't transition quickly enough to meet the new health needs you might have. When I hear what you describe, I think it is something other than the FM (but I'm no expert, certainly not on FM, even tho' I have that also.) I wish you could discover that is at the cause of your pain. My PCP once told me that diagnostic tests are really very limited when it comes to pain. What I mean is, he was open enough to say something like, "just because there is no Dx does not mean your pain is not real." Unfortunately, this is how Pain Seekers can manipulate the system to get their substances to abuse.
Anyway, that is good news about the Vit. D. Although I though some of the mega-dose takers were doing possible harm to themselves, it does appear that some need a huge amount to effect any change. You said you will continue to monitor it and adjust the dosage, which is always a good idea. I am still with the group that feels it is a good idea to get the level up to the high end ( not over) of the normal range...like 60-80. Have you noticed that you are sleeping better? I think that my sleep improved a little when I built up my Vit. D. It takes Vit. D to produce (or maybe it is activate) melatonin, so maybe that is it.
glennie19, Interesting tale about the video, and a good example too. Like so many, back pain got my BFF in to see the doc, and it was mets to spine and hip. While no one wants a Dx of mets, at least it is something concrete. As I said above, when a Dx test doesn't turn something up, it is harder and more frustrating to get help or even the right meds to take the pain away. (Please tell me you got a little buttered popcorn to watch that video? Kidding!)
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Glennie, my poor cousin is HIV+. She was infected by a boyfriend 30 years ago. She is one of those rare people who is naturally resistant to HIV, so although she is on the HIV meds now, she is fine. However, she looks like a tough broad and she has serious back problems. Every time she went to the ER unable to walk, the docs would take one look at her chart, see the HIV and refuse her pain meds. I am absolutely sure they assumed she had HIV from sharing needles, except she doesn't.
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Pain is seriously under-treated. It is something that I climb on the soapbox about. Momine: that is just terrible about your cousin. And the exact type of thing we are suppose to "learn" from that video. Wondering if it will make any difference at all? And no popcorn, Elimar. Could have used some Doritos,,, or maybe a Scotch. Having fibro,,, you know, there are no good diagnostic tests for it,,, a trash can diagnosis when they can't find any other cause for muscle/skeletal pain. But pain is pain,, and meds are needed! I got things to do, Doctor,, got no time to be sitting around belly-aching! Give me something to get me moving.
Momine: does your cousin have X-rays or MRI's to support her pain back claims? Not that I think she needs them, but just saying,,, **look, here's PROOF that I'm in pain** Sadness. Can't the junkies go back to heroin and leave the Vicodin/Lortab/Percocet/Dilaudid for those of us in pain?
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Glennie, yes, she had support. After some excruciting bouts, she finally had surgery for the herniated disk that caused all the trouble
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I have a chronic pain condition which started 18 years ago, first diagnosed as rheumatoid arthritis then 5 years ago a pain clinic changed it to a problem with neural pain pathways opening and not closing. Either way the the medication was the same and the outlook - no cure and here for life, so it really made no difference to me what they called it. The medication does no more than take the edge of the pain that is in all my joints and I have major flare ups in one, two or more places all the time. I have not had a day without pain in 18 years (you can imagine my delight in having to go through 7 surgeries in the last three years for the BC). I have always tried to get on with life anyway and not restrict too much of what I do, though it is getting harder now. When I went to the pain clinic they had nothing to offer me. My GP wanted me to go back last year in case things had changed and they refused to see me because they said I was too high functioning! Thanks, sorry I'm not a basket case - yet - though with unhelpful attitudes like that I will soon get there
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Everyone must be laying low for Pinktober!
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Hey Eli, I've been laying low with exhaustion. I am finally moved into my renovated house. It is wonderful. Even tho I still have napkins stuck in the deadbolt holes above the doorknobs on all my exterior doors. Now I gotta clean out my "old" house and get it ready to rent out. I can't sell because my business is still in the basement and I want to "save" it incase my DS ever wants to move back to his hometown.
Anyway.... boy do I get perturbed at the ads on tv and radio for BC awareness. MY DD even said last week she heard an ad on Pandora that was a phone ringing and the woman answered and it was a doc telling her she had BC. She was outraged. I said I feel like that all the time. One cannot get away from it. Even if we are trying to move on with life...... we are bombarded with Warriors in Pink ads. Of course, if my personal antenna weren't so attuned to everything BC would it affect me so much..... hard to tell, but having my DD say that about what she heard was interesting. Her antenna might be raised pretty high, too.
Pain and docs. Their antenna is so high now for people seeking pain meds it is crazy. I had to do some serious doctor shopping to find ones that listen to me and even then I have to repeat myself a lot. haha
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Hey, mac, I won't say you are too old school, but you need to ditch that personal antenna and upgrade to a personal pink satellite dish now. I fear you might be missing out on ALL the Pinktober transmission signals this year. You don't want that now, do you? Seriously, tho', you just could not beat that lovely bay view from your old house...please tell me you did not have to give that up!
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**trying to not look at ads*
One of my neighbor's had a health crisis this week. We had to call the EMS to break down the door to get her. Initial diagnosis was pneumonia,, although she had significant mental confusion and diarrhea. Well the cultures came back today and she has Legionnaires Disease. Wondering if it is in her AC system,,, the neighbors and I were in her house for a couple of hours cleaning it.
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I am super tired lately, between having a lot of work and a sick husband. The only good news is that I get to go on a trip with my job. I have already lined up babysitting for DH and for my dog while I will be away.
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Hello I am 45 and recently separated from husband...I have friends and family close but they can't possibly understand what I'm feeling the way many of you can...I need friends that understand what I've experienced and that can possibly share advice on how to cope with so many issues at once... I want to be happy and enjoy the rest of my life but often I feel so sad and exhausted and extremely frightened of recurrence. I just began working in a very physically demanding job. I thought that I could handle it but now not so sure... my back and joint pain is excruciating at times and I feel like I will crumple to the ground..I am alone much of the time but it is by choice... I want to break out if this depression and start living again. The pain of cancer and impending divorce has crushed me...please help...I take femara and if anyone could offer advice on meds or supplements that could ease my joint pain I will be eternally grateful. .thanks for
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tg1203, welcome! There is never any good time to get BC, but you are right that it can feel all the more crushing when you have other stressful events going on in your life. I cannot comment on the back and joint pain, never having taken Femara. I hope someone here can address that specifically for you.
I will say that chemo really takes a toll on muscles. I am older than you are and active but I don't feel like I have fully bounced back, even 2 years out from my chemo. What your brain remembers your body being able to do prior to chemo may not be reality anymore. I guess time will tell if you can handle your job or not.
You did not mention if you are taking any meds for pain. If not, it sounds like you need some. BTW, I'm a real less is more person when it comes to medication, but I don't think people should just suffer through pain either. If you have mentioned this to your docs already, they should be addressing it. (Although, we have just had recent posts on this thread where the docs have become tight-fisted on dispensing the scripts for pain medicine, I do hope you are able to get something for relief) The same can be said for depression. It is so NORMAL for cancer to get anyone down, but no one want to be down in a funk on a continuing basis. If you truly feel you can not break out of the depression, you may have to get chemical help with that also...maybe short term, at least. You have already done one thing that can help with depression and that was to join this community, because you are not alone here. We don't all have the same cancer, but it has affected almost all of the lives of people posting on these threads. Life does not stop when you get cancer. It stops when it stops. Until then, everyone is trying their best to get through their BC or live with their BC. What more can we do, really?
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Thank you for your reply... I am.in the middle of reconstruction of my left breast right now and have an expander in... I'm taking a half of a Lortab at lunch but doesn't seem to help..I only have those for now as far as I know and I will mention It to my oncologist n November after bone scan . Really nervous about the scan I know that my bones hurt and am terrified of the results... I take osteo nutrient pro and potassium and vitamin c jw if there is some other supplements I should consider ??
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tg1203, Let's see if anyone here responds about Femara. If not, find a thread about Femara and ask your bone pain question there. I know others have mentioned bone pain on different anti-hormonals, so maybe it is a SE? What is the location of your mets? Are they all bone mets? I know those can hurt, and they are often discovered when a patients presents with pain. It is going to be hard waiting a month to see what is going on. Try not to let the anxiety take over. Maybe make a conscious effort to do stuff that you enjoy. You have to be stubborn and not let BC spoil everything for you, ya know?
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tg1203: I did 5 years on Femara. Coming up on 1 yr anniversary of no longer taking the evil pill. I was fortunate in that my side effects were fairly minimal. The main thing I found out that helped me the most was switching to taking it at night just before bed. When I took it in the AM, by lunchtime I was exhausted. I lived not too far from my job; I would drive home at lunch, lay down and fall directly to sleep. I had the alarm set for just 30 minutes, but it helped a bit. Someone on the Femara board suggested taking it at night. I started that about 6 months in, and honestly, it was the most help of anything I did. If you take a statin there could be some adverse stuff going on with Femara-not for everyone, but some folks have trouble. I had random bone pain periodically all through my 5 years. I had a standing script for Tramadol, which isn't that that huge of a pain reliever, but when I needed it, I reached for it. Some of the other gals swore that Effexor helped them - I never tried that as I felt like my symptoms were managable most of the time, once the pesky fatigue got taken care of. Hope you can get a handle on it.
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tg1203--the joint aches are a side effect of all the drugs like femara. I took arimidex, had the joint aches and pains, but not as badly as you. Taking loratadine, an over the counter allergy medication was a huge help and has been for many women. Loratadine is the active ingredient to look for, also make sure the package says "non-drowsy" formula. Another option is to talk to your MO about switching from femara to one of the others in that class. Many times a woman can tolerate one but not another of those drugs.
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Ever since my mammo squishing in Aug., my treatment side has been twinging and itching, like the lobes, ducts, and nerves are irritated. My treatment side is a delicate little flower now; and yes, every twinge makes me think I am growing something evil in there, but I know it is what I always write to others: the ravages of radiation, the gift that keeps on giving. Arrrgh!
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